Wednesday, 31 August 2011

Day 1 - 4 post op

Wednesday - Saturday (Day 1 - Day 4)

Katelyn has been doing relatively well. Her progress has been slow, but there have been no major setbacks which is always something to be grateful for. She had started becoming more awake and aware after 2 days of being heavily sedated and drugged up. She wasn't the happiest in the world, and having her hands tied down (to stop her from pulling out the ventilator, 4 drains and tube in her nose, lines etc!) really was frustrating for her and very frustrating to watch. They were hoping to get her off the ventilator on friday, but for some reason they didnt feel she was ready for it so waited until saturday. She struggled with breathing after it came off, and luckily our incredible nurse worked hard on her to keep her breathing clear and to help her out as much as possible. The nurse also kept her hands bandaged up, but allowed them to move around, so she could at least move her arms but not really pull anything out.

When life stands-still

I don’t really want to recall the experience in detail, or maybe I’m not ready to yet, but the details are not important. For a moment on Saturday night just before we left, Katelyn’s heart stopped. We were there. We were asked to leave as they started chest compressions on her little body, right over her surgery cut. A minute later (not that I had any idea of timing, but it felt like a lifetime) she was fine, besides incredibly sore from the ‘clinical’ effects, and of course from numerous hard compressions on an incredibly tender area. I don’t think one can ever explain what its like to witness and believe for a moment that it’s all over - besides feeling like my entire life was over. In that moment, all we could do was pray, though we had no words to say.
The details around it were unfortunate, it was really a ‘technical glitch’ and the doctors and nurses know and admitted it. Most importantly Katelyn is fine and they assure us that there are no implications for her.

It really shook me. It reminded me of how incredibly fragile life is, how we can become so casual and take so much for-granted. It reminded me that God was in control and the only one that we can turn to in times of distress. I cannot imagine how empty I would feel if I didn’t have that to hold onto.

I love her more than ever.

** Wed 31 August - She’s had her pacemaker surgery and is back on a ventilator – hopefully will get removed today. Praying for rapid recovery after this last hurdle is overcome!**

Friday, 26 August 2011

The Operation

After checking into hospital on Tuesday 23rd, we sat around for 6 hours until Katelyn went in for the Cardiac Catheterisation. I took her into the Theatre, where he gassed her to sleep(and she screamed and screamed) and then I lay her on the slab. She is already a floppy baby, but wow, she become like a dead doll within seconds in my arms.

She was delivered back to us in the ward,seriously miserable. The anaesthetist told us we could give her milk (considering she hasn't consumed anything for 12hours!). She devoured it.

For the next 2.5 hours she was totally miserable, vomiting from the milk (the nurses then said you not meant to give milk-ahhhh doctors!). When she eventually settled down, and the doctors had done their pre-surgery rounds, we headed to bed. What an angel, she slept so well when she was finally down. I couldn't sleep, racing mind.

Woken at 4:50 (madness!!!) for sterile bath, sister made Katelyn cry LOTS doing horrible unnecessary things, but after that she had her pre-med and became a cute little sleeping child.

Simon arrived at 6:30am, and 5minutes later the theatre nurses came up to get her. Simon carried her down, and we sat in the Theatre waiting area together praying for her, the doctors, the surgery and everything possible...then he had to hand her over.

After we had a few hours to catch-up on sleep(me!)and get to gym(Simon), we waited for another 2hours for her to come out of surgery. After 6 hours, she came out and we had a chat with the surgeon...all a little overwhelming, but the summary looks something like this:

- It was a complicated operation.

- Good closure of the holes and she is happy with them considering they were so big

- The valve was incredibly 'deformed' and a floating valve, she did the best she could with it and seems to be happy with the result

- Post-surgery her heart hasn't got a steady rhythm,so is on pacemaker for now and will see if it regulates itself,else she'll need a pacemaker which will be put in within a week or so

- (Katelyn's extra complication is an obstruction around the aorta outflow tract). The short version of the 'obstruction' is that she removed a small bit of tissue which seemed to help a little bit, but she's being very guarded of how the heart is going to respond. She did notice it made a difference when she removed the tissue, but she says it'll have to be something we monitor closely going forward.

**But for now we just sit in ICU watching our little one sleep and slowly wake, struggling with her hands tied down, and I can only imagine desperately wanting to rip out the million tubes all over her. **

God is ever faithful.
Sent via my BlackBerry from Vodacom - let your email find you!

Wednesday, 24 August 2011

17 months(in 1 day!) and a repaired heart!!

We made it. We have literally been waiting for this for months and months. Katelyn had her open heart surgery today. I'll spare the outcome details for another post, but its been repaired. It's a big moment.

The next short stage of our lives will be centred around Katelyn's recovery. I'm trusting God to write a miracle story, not to be defined by any previous experience. I'm ready to be by her side and asking God for the grace to be all I can be to her.

Hospital time is really all-consuming. Its not my favourite place, but for a short period of time your world is small and it brings you in touch with a diverse group of people. I'm overly grateful that I live down the road and am not thousands of miles from home like so many here but mostly,that our case is 'simple'. There are so many kids with so many really complicated heart-problems. We have no idea.

So, here's to a new chapter - 17 months and a repaired heart!

Thursday, 18 August 2011

This time next week

This time next week I'll be in theatre...but for now its time to swing and have fun!

Thursday, 11 August 2011

Why they said 'Yes'

We had our cardiologist appointment two weeks ago - the one we've been waiting for for 6 months! We were feeling pretty anxious about the appointment, mostly because of what we may find about the 'complication' that the cardiologist had been concerned about. 

Anyway, he didnt do a detailed scan (phew...saved us some cash!) - he only checked up on the complication and checked her out. He was thrilled that she's looking so healthy and had 'doubled-in-size' since January. He didnt give us too much other feedback, which we expected and promised to get back to us the following week once he'd chatted to the Surgeon. 

After a painful 5 days of waiting...he phoned. Surgeon's feedback " There's no point in delaying it any longer". YAY! So we had a date scheduled, 25 August 2011. Catheterisation scheduled for the 23 August, and then admitted on the afternoon of the 24th to prepare for the morning. Its a relief to have it scheduled, I feel ready for it, trusting God for it all.

Ultimately, this is why they said 'Yes, now...'

the nice bulging arms...
 that pot belly...
 round all over
 loving my fattening milkshake...
so much stronger!

**the complication remains a concern for him (an obstruction of the aorta), but he is hoping that the repair of the hole will indirectly fix holding thumbs**